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Law will boost research for rare diseases

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In the midst of a national conversation about so many things that have not been working in
Washington, let’s take a minute to applaud a success.

Bipartisan efforts in Congress have achieved the passage of a bill that brings great hope to
families fighting every day to sustain life for their children with rare diseases.

A bill introduced by Ohio Democratic Sen. Sherrod Brown and co-sponsored by Ohio Republican Sen.
Rob Portman has been signed into law by President Barack Obama.

This bill will exponentially expand the leverage and landscape for research into rare
diseases.

Now, through the authority of this bill, children’s hospitals across the country can mobilize to
share data and pursue research to find new treatments and cures. This will help patients who often
are overlooked because of the rarity of their conditions.

These children, their families and their networks of caregivers have for years struggled in
obscurity to raise funds, enlist scientific partners and raise awareness about rare diseases.

Now, there is a new tool in the toolbox to enable pediatric researchers across cities, states
and regions to effectively combine efforts and move discoveries along faster to reach those who so
desperately need them.

The Batten Disease Support and Research Association (BDSRA), a national rare-disease advocacy
organization based in Columbus, is both grateful and hopeful for the positive changes this
legislation will provide.

Batten disease is a rare, fatal, inherited neurodegenerative disorder. For children born with
this devastating disease, the clock is ticking.

A cure or viable treatment may very well be an outcome of this legislative action.

For more information about rare disease and our families, visit
www.bdsra.org.